Even before writing this article, I already know that it's going to ruffle a few feathers. It is by no means intended to disrespect anybody. This article is simply about my views and opinions regarding my son and our life. Having said that, let us begin.
Every province, every state, every country has a magic number when a special needs person is no longer eligible to attend their specialized school because they are now officially adults. For us in Quebec, that number is 21 years of age.
Those who are out of the school system will be starting a new chapter in their lives; a chapter that many parents are unsure of. Many are not independent. Many cannot continue their studies in a regular school environment. Many cannot work. Many do not have a place to go to during the day that would continue their daily routine they were so used to having at school.
I often wonder what things will be like for my son when he reaches this stage in his life. Will he be capable of continuing his studies with assistance? Will he be able to work in a structured environment and communicate with people? If not, what will we do then? He can't stay home all day. It's important that he socializes and interacts with people. I will need to find a community group that has activities and outings with individuals his own age. What I fear most is the unknown. What if something happens to me before I can secure my son's future? There isn't anyone on this planet who will know how to care for him like I do.
Amidst so much uncertainty there is one thing that I do know for sure and that is, autism doesn't end at 21.
We also have another obstacle to deal with. We live in a province where language is a huge issue. I can't even begin to tell you how many times people have said to me "Oh your son doesn't speak French?! Do you realize you live in Quebec"? Really, thank you kindly for pointing that out. Do YOU realize my son is autistic and for the first five years of his life barely spoke?
I'm just so grateful that he has made significant improvements with one language that he can communicate in. The sad truth however is that I'm facing a harsh reality of what his future holds for him in this province because he doesn't speak French.
If you know anything about Quebec then you are aware of the debate between the French and English language. When my parents immigrated to Montreal from Italy, like many other families, they had the choice to enroll myself and my siblings in English or French school. They chose English school.
My first language was Italian. I learned English and French at school. I spoke Italian at home with my parents (still speak to them in Italian) and English with my siblings. I spoke both English and French with my friends. My best friend Christina went to French school. My husband is French Canadian and I speak to him in French and English.
Thirteen years ago my child was diagnosed with autism and at that time was completely non-verbal. I was searching high and low for the right therapy for him. It was imperative to be consistent. I had to choose a language to teach him how to communicate his needs. I had to decide if therapy would be done in English or French. I couldn't possibly teach him two or three languages if he couldn't even speak one. So I chose English (which by the way is also an official language in Quebec).
One language across the board: therapy was done in English, he attended an English school with some French instruction and we communicated only in English at home.
I have been fortunate enough to find incredible English-speaking therapists for my son over the years. I have had French Canadian therapists that spoke to my son in English and they were all amazing. I am grateful for all that they have done with him. But I have come to realize that as he is getting older and his needs are changing, the resources he needs right now are few and far between in English.
Services in our community are predominantly in French. If I want my son to have access to more English resources we would have to move to the west end of Montreal. Sell our home that my husband built from the ground up and move. If I want my son to have even more English resources and secure his future so he can communicate in English and not ever have to worry about the French language, then I would have to move out of Quebec.
How do I do that when our whole family is here? How do I take him out of the only place he knows? We can't be away from our extended family, our children and grandchildren. Everything we have worked so hard for is here. And we love our city. We love our province. We just want quality English services for my son.
I have spoken with a few parents who have given me some great advice and useful information. In the meantime I have put my son on a waiting list for English respite service, which is for the moment very limited. I may be way ahead of schedule because he's only 14 but I'd rather play it safe than sorry.
Follow Linda Mastroianni on Twitter: www.twitter.com/speaking_autism